I'm new to these boards. I was recently diagnosed/treated for AIS -- I had a pap and colcoscopy that indicated possible AIS and then about a week and a half ago I had a conization. My gyn said that the biopsy of the tissue removed during the conization showed that I definitely have (had?) adenocarcinoma in situ, but that they removed all of it and my margins were clear. He referred me to a gyn/onc that I will be seeing next week. My normal gyn also has warned me that because of the nature of AIS I will probably need to have a hysterectomy at some point in the next few years. He said he expects I would keep my ovaries (yay).

I am trying to keep myself busy and distracted, but when I think about all of this I am terrified. I am only 36, I am physically fit and (other than this stuff) healthy, and the idea that I have to see a doctor with "oncologist" in his title is freaking me out. The idea that I might have to have a hysterectomy terrifies me, and on the other side of it, the idea that this AIS could pop up in other parts of my reproductive tract also terrifies me. My husband and I don't want to have kids, so I am not worried about that part of it, but I hate going to the doctor in the first place, even having blood taken scares me, so the idea of a fairly invasive surgery and the recovery is horrifying.

I've read lots online and of course I latch on to the worst stories and start thinking they will happen to me. I'm posting here just to see if anyone has had a similar experience and if you have any encouraging words for me? This is not the end of the world, right? Plenty of people have hysterectomies and go on to live totally normal lives, right? My doctor says they caught everything really early and I'm going to be fine, but I can't help but worry.

I'm also new here, but facing a similar situation. I had AIS diagnosed as a result of a cone biopsy about 10 years ago. Biopsy came back with negative margins and I was monitored closely for 5 years and never an abnormal test. I had 2 kids after that. I'm 38. Just recently my pap came back AGUS and my dr is recommending hysterectomy. I'm waiting for the results of endocervical curettage, but assume it will come back with bad news. I was devastated at first, but now that I'm more comfortable with the idea, I think I will be glad to get this done and hopefully it will be all that's required and I won't have to worry anymore.

Don't know if this helps, but just thought I'd let you know I'm here too, going through this at almost the same time. I don't know much about this, my dr is not very forthcoming with information and at my last appointment I was too shocked to ask much, but next time I'm going with a list of questions. If I learn anything, I'll let you know.

Hi Waterstrider,
Thanks so much for your response!! It's comforting just to hear about other people's experiences. I'm really sorry you're going through this but at the same time I was really interested in hearing that it's been 10 years since you were first diagnosed via the cone biopsy. My cone biopsy was only 4 weeks ago and my first "closely monitoring" check up is in 2 1/2 months, and there's a part of me that's already worried that my first check up will show abnormal cells again--knowing you had 10 years is encouraging. With my age, though, I know I'll be having the hysterectomy within the next year most likely. I'm slowly getting used to the idea too. My doctor said that if I was younger and I wanted to have kids, they would monitor me for as long as it took, but since I'm already 36 and my husband and I aren't planning on kids, I should plan on having the hyst sooner rather than later.
Does the endocervical curettage hurt? I've never had that done before but I know I'll be having it at my next check up and I've been worrying a bit about it.
Thanks again for the response--I hope things turn out well for both of us!! Let me know what your doctor says!

Hi jacey75,
The curettage wasn't bad, a little uncomfortable with a little cramping afterwards, but I didn't find it painful. My gyn used curettage instead of pap to monitor me for ages, so I just got used to it I guess.
I haven't yet been referred to a gyn/onc and I'm curious what yours told you. All I know is that my gyn recommends hyst and from what I've been reading, it seems like a good idea. I am also hoping to keep my ovaries, but so far nothing has been mentioned in that regard. It will be on my list of questions for next week.
Yes, I'm pretty glad I had 10 years of normal results and got to have my kids. Got them in there just in time really, since my youngest is 1.5. But honestly I wasn't expecting to have to deal with this for a second time. Once they told me my biopsy margins were clear, I pretty much thought I was in the clear. Now I worry about what happens if it comes back after hyst? Its hard not to think about it ALL the time.
I am truly sorry to know you're going through this too, but as you said, its somehow comforting to know you're not the only one. I'll stay in touch as I learn more.

Well, got the results back from my curettage and the news was not so bad. No AIS, only AGUS, but dr not confident that the ECC detected everything. So because of my history, dr still recommending hysterectomy but said doing a second cone to check things out would be reasonable to. So now I have to decide. Leaning toward hyst, but I will do some more research over the weekend.

I know this post is a little late but I am just recently new to this board as well. I sound like I'm in a very similar situation as you (although I haven't had the cone biopsy yet). I was diganosed with a few days ago after having AGUS and a colposcopy last week. I'm not sure where your cells were found but mine were in the endocervical area. I am seeing an oncologist on Monday (and I agree, going to a doctor with that word in their title is very frightening!). I've been freaking out the past few days as well - I can only imagine what it will be like for the next few weeks - even months hoping this doesn't come back.
Like you, I don't want to have children so I'm not really too worried about that part of a hysterectomy. I thought I'd at least share that aspect of it with you since I know that's not really a common decision for a woman
With all of this I've been wondering too about the hysterectomy - I know they talk to you about it and I expect the oncologist to bring it up. I'm scared to death of surgery too so I know where you are coming from! I have a colon disease so I'm used to being poked and proded in not so fun areas, but I've never had surgery so that scares the crap out of me. But so does wondering if I will have this come back again (assuming I find out a cone biopsy would get rid of it since I haven't had that yet).

I guess I may not be much help at this point, but to let you know you aren't alone and even if you do have the surgery, keep in mind its only 1 day and then you keep getting better after that! I do know quite a few people (at least 5) who have had hysterectomies and all of them are doing just fine today. I'll keep you in my thoughts and if it helps let you know what I found out next week and what I decide to do. Every since my colposcopy/biopsies last week I've had swollen lymph nodes so I'm freaking out about that too right now.